Amazon to Support The Facial Pain Research Foundation

It takes millions of dollars for scientists to find a cure.  The world-wide support for The Facial Pain Research Foundation’s six research projects to find a cure for trigeminal neuralgia and related neuropathic pain has grown enormously over the last three years.  Corporations, foundations, scientists, medical professionals, celebrities and individuals have donated their time, money and talents to help our international consortium of researchers.  Much of the momentum is the result of friends with neuropathic pain asking their friends to help.  As a result, Amazon has become a helper to our growing team of supporters.  Please think about your friends and how they can also help us and let us know at This email address is being protected from spambots. You need JavaScript enabled to view it.

Amazon wants to help raise money for The Facial Pain Research Foundation through its Amazon Smile Program. It’s as easy as shopping on Amazon.com, in fact that’s exactly what you do. The Facial Pain Research Foundation is now supported by Amazon.com’s Smile program. The Smile program allows a portion of purchases made on Amazon Smile to go directly to The Facial Pain Research Foundation.

When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization.

If you already have an Amazon.com account

Simply type in Smile.Amazon.com on your browser and login

Click ‘Select and Start Shopping’.

In the top menu bar ‘click the down arrow’ to the right of ‘Your Account’, then click ‘Change Your Charity’ in the drop down list and choose The Facial Pain Research Foundation

The Facial Pain Research Foundation

Salutes Our Thousands of Volunteers

The Facial Pain Research Foundation is fortunate to have had thousands of Volunteers assist in the raising of funds for its Research Projects to cure Trigeminal Neuralgia and related neuropathic pain.  The following article written by Karla Gudgeon in the UK is a wonderful example of someone in pain “fighting” to help others to end the pain.  We truly appreciate all of the Volunteers and their efforts on behalf of the FPRF.

Michael Pasternak, FPRF Founding Trustee

A Holiday Message from Karla Gudgeon

Hello again from England!  Some of you have probably heard of me from past articles. My name is Karla, nicknamed Athena and I have had TN for nearly a decade, since I was 18. It's been an awful year in many ways, not least because I seem to be getting TN on my other side now as well, something I have dreaded. But do not fear - this is a positive article. The theme of this article is that you may not reach your dreams the way you intend; life may not go as planned, but sometimes things work out anyway in ways you could never have imagined.  

As some of you know I run Child of Athena Crafts, selling wooden pyrography items, cards, and official FPRF merchandise, with all the profits going to the FPRF - feel free to check out my page on Facebook and see what I do! I also collect loose change and do other fundraising activities. Well I have just calculated the fundraising totals for 2018 and I was astonished to find out that they came to at least £2000 ($2500) when everything was taken into account. £510 of this was from a sponsored challenge, the rest is from my merchandise, loose change and other activities. I also sell items down at a local Garden Centre. Some of the money paid for the materials to send a large shipment of cards and merchandise to Florida, where hopefully it will be turned into even more funds and awareness! 

Firstly then, an update on the sponsored challenge - some of you will already know that two years ago I decided to undertake ten sponsored challenges, on horseback, set by my instructor to be at a difficult but attainable level. Horse riding is a great love for me, but is very difficult for me as the pain from my TN makes me pass out unconscious about 30-50 times a day, or whenever an attack is triggered, you know like by doing exercise or being out in the cold! I also have Ehlers Danlos which makes me dislocate and sprain joints all of the time. The challenges included cantering a full circuit on both reins, turning on the forehand, and a selection of agility and control based exercises. One challenge (reversing) did have to be exchanged as I simply couldn't do it without dislocating several joints due to my Ehlers Danlos. We exchanged this for a full spiral in trot on both reins followed by a circle in trot with no stirrups, on both reins. Eventually though Amos and I completed our ten challenges - I collected the money, he would rather have 510 carrots. He's a wonderful pony though - every time I pass out he just stands patiently and won't leave until I'm back around - even if I'm still on the floor, as long as I'm conscious!

Secondly the merchandise - I have moved away from cards and more into pyrography this year, and am improving all the time, learning new techniques. I still make cards, and the merchandise as well of course, but pyrography is my main love. Please pop over to Child of Athena Crafts on Facebook to see what I make, or check out my items on Conscious Crafties website (https://www.consciouscrafties.com/crafties/child-of-athena-crafts/). More items are being listed gradually. My Mum, who had to give up work to care for me also makes dreamcatchers, a remnant from my childhood nightmares which she has recently got back doing.

Finally, and nothing illustrates my point about dreams coming true better than this. Over the year I have been asked to play Princess Belle at various charity and community events. Over the year this has evolved somewhat - although I do not get paid for this I love doing it as a way to give something back to the community and make some children (from all walks of life, of different ages, some very ill) so happy. To me that is true magic, and a truly humbling thought to know you can make such a difference to a child, just by being there and talking to them. Now to tell a story - twenty two years ago a little six year old girl visited Disney Land in Florida. I was allowed to choose one dress - I chose Belle, my favorite princess as she was so like me. She didn't fit in, wanted adventure and loved her books. Now ironically that same holiday I damaged my ankle and had to be carried around or use a wheelchair - little did we know that it was a sign of things to come. Now fast forward a few years and I dreamed of having a few years off after uni and being a princess there for real... that wasn't to be due to my health of course. Ironically though, by being ill, I've ended up accidentally falling into doing something very similar! Either way I attained a dream, just not necessarily in the way I expected. Its a lot of effort, and I have to take very high morphine to make sure I absolutely never pass out when in character but the smiles on the children's faces make all the pain and effort worth it.  

So with that in mind, TN has taken my freedom, my masters and phD, my driving license and in places my dignity. But it will not take my dreams, because even if you can't attain them the way you expect, with a little modification they can still come true! 

So thank you to Michael and all the FPRF for that most precious gift of all - hope. 

Merry Christmas and a Happy New Year

Your TN Princess, Athena. 

Mervyn Rothstein Interviews

Todd E. Golde, M.D., Ph.D.

Todd E. Golde, M.D., Ph.D., is executive director of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. He oversees neuroscience and neuromedicine research programs across the University of Florida campus. A professor of neuroscience and neurology, Dr. Golde joined the University of Florida faculty in 2009 and became founding director of the university’s Center for Translational Research in Neurodegenerative Disease, which he led until taking charge of the McKnight Brain Institute in December 2016. He is also director of the NIH funded 1Florida Alzheimer’s disease Research Center group of institutions.

An internationally known expert in the scientific understanding of Alzheimer’s disease, Dr. Golde has published more than 240 papers that have been cited more than 30,000 times, (https://scholar.google.com/citations?user=X_9xacsAAAAJ&hl=en), and has expanded his leading-edge research to include other neurodegenerative diseases, cancer and even malaria. He is lead investigator for the Facial Pain Research Foundation’s Gene Therapy Research Project, at the University of Florida, to find the cures for TN. 

 Dr. Golde spoke with Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005.

How and why did you become Involved In the “World” Of Scientific Research?

TG: I’ve loved biology from as far back as I can remember. The real catalyst was when I was in my junior year in college. I didn’t know what I was going to do. I was thinking about going back and teaching at a boarding school for a while before I figured out what I was going to do with my life. But I was a biology major at Amherst College and I took a course with a professor named Richard Goldsby, a wonderful teacher, who was basically teaching a graduate level course to undergraduates. We had to write a term paper, a research-hypothesis type paper, the first time I’d had to do that in college, and the response back was that this was one of the best papers he’d read in many years, undergraduate or graduate. Please come talk to me. I think you might like to do research. 

Your laboratory conducts disease oriented research with specific, but not exclusive focus on neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease. How did you get involved in developing a research project to find a cure for Trigeminal Neuralgia and related neuropathic pain?How did the development of this research project come about, and what motivated you to take on the leadership role?

TG: I make no claims about being a facial pain or trigeminal neuralgia expert. I’m just thinking opportunistically about how we can make a difference. When I came to the University of Florida, I was the founding director of the Center for Translational Research in Neurodegenerative Disease. The chair of the department of neurology at that time had hired somebody named Dr. Andy Ahn. Andy worked on headache and pain, and the director needed a place for him. I had some space at that time, so Andy was a scientific neighbor, and we would have discussions.

The University of Florida is one of the hotbeds in the world in terms of a gene therapy approach based on adeno-associated viral vectors – we call it AAV for short. A former dean actually discovered this virus. One of our senior faculty members participated in creating the first gene therapy vectors around it. My lab had already been using AAV vectors, but we doubled or tripled down when we came to the University of Florida. AAV has a naturally affinity to get into neurons.

So Andy sort of triggered this, but my bandwidth was stretched at that point – it’s still stretched. I kept on tweaking Andy to go down this road. Andy left academics, and at some point I said I should do this.

We felt it could be something that could be rapidly translatable. Finding a cure for trigeminal neuralgia is a huge unmet medical need, but it’s an orphan disease that doesn’t affect enough people to attract a huge amount of attention.

There’s a chance for harm if we get into humans, but the nice thing about working with trigeminal neuralgia is we can at least start our initial studies in humans in people whose next option is surgical ablation of the trigeminal nerve. That means that there’s an out if we actually happen to make people worse. When we do these kinds of trailblazing experiments or envision them in humans, we need to make sure that if something could go wrong we have a way out.

Now we’ll begin the animal phase of study – testing in animals. And I know how much this research can really affect people’s lives. It may not work, but we have everything in place to test it. So let’s try.  

If Gene Therapy isn’t new, why do you believe that it can work to block pain signaling in the nerve? 

TG: It really comes down to technical details. People have used the wrong vectors before that had their own liabilities. I honestly just don’t think people have thought that much about this approach.

Last year, gene therapy had its first really radical major success outside of the eye, which was with children who had a disease called spinal muscular atrophy (SMA). They were treated systemically with a AAV vector – a different flavor of the same thing. These kids basically get spinal motor neuron degeneration when they’re young, by the time they’re two years old, typically, they die. Fifteen children were treated with huge amounts of virus, and reports last October showed that every one of these kids was alive at two years of age. And those with high-dose vectors, many of them were almost asymptomatic. At that age the expected survival rate would have been eight percent. So there are some children walking and living normal lives after gene therapy who otherwise would be most likely dead.

So I think that was a turning point in the field, to say this, AAV-based gene therapies, really will have its place in modern medicine. And that study in SMA was much more heroic and much more challenging than what we envision. So I think the time’s right. We know we can deliver the gene to the nerve. So now it’s just finding the right gene that will dampen pain signaling in that set of neurons, hopefully without doing harm.

Supposing your theory and project is proven successful. What implications or lessons wil this work provide for other researchers?

TG: I think it would say that perhaps the gloves come off on gene therapies for many disorders, especially things that are targeting nerve cell dysfunction. 

Because of the Hippocratic Oath – physician, do no harm – we need an out, so we wouldn’t want to go and do this on intractable sciatic nerve pain. Because what happens if you make them worse – you can’t cut their sciatic nerve without serious implications.

But I think success could open up the door to many different approaches targeting pain. And given the current opioid epidemic, driven from people at least initially taking these medications to treat chronic pain – (whether that’s right or wrong or medically appropriate is another question) – I think this viral approach enables us to deliver the medicine or treatment precisely to the cells or organ or nerve and hopefully avoid the systemic side effects that would come from taking a pill or an antibody or other approaches.

Read more ...

THANK YOU PAT AND AMY TOMASULO

AND CHICAGO

LAUGH YOUR FACE OFF Has RAISED OVER $1,200,000!!!

By Kris Gaganidze

The Fourth Annual LAUGH YOUR FACE OFF was held May 8, 2018 in Chicago’s beautiful neighborhood of Lincoln Park at the Park West.  This marks a new date and a new bigger venue!  All of this helped to make this year’s LAUGH YOUR FACE OFF a huge success. With temperatures in the high 70’s and a beautiful sunshine day to come out and help support The Facial Pain Research Foundation (FPRF) in their fight to find a cure for Trigeminal Neuralgia (TN).

To date LAUGH YOUR FACE OFF has raised over 1.2 million dollars for research for a cure for the rare nerve disorder called Trigeminal Neuralgia.  The   Foundation is currently funding six different research programs to find a cure for Trigeminal Neuralgia.  TN is known to be one of the most painful conditions known to humans.  It is often called the suicide disease because there is no known cause and no cure.   

My husband, Kyr and I had the great pleasure of meeting Michael Pasternak six years ago.  He is one of the people who started the Foundation looking for a cure.  We got involved with Pat and Amy Tomasulo four years ago when we were asked to help with LYFO.  What an honor to get to work with and know these amazing people.  They are the brains and Founders of the brilliant LAUGH YOUR FACE OFF! This year’s LAUGH YOUR FACE OFF took place at the Park West Chicago.  The venue was twice the size that we’ve had in the past.  So over twice the number of people (700) attended Saturday’s event.  The evening started with cocktails, appetizers, silent auction and raffle!

My husband and I had the privilege of checking in VIP guests, sponsors and TN patients.  What a joy to thank our sponsors personally and give hugs to TN patients as they entered the event.There was a separate raffle set up just for the TN patients.  I think they appreciated the thoughtfulness of a special raffle just for them!  And a huge shout out to all of the returning and new sponsors!  We appreciate your generosity and support! 

The evening started with the very funny Pat Tomasulo warming up the audience with his great standup comedy.  After Pat got the crowd laughing we never stopped.  He was followed by five, yes five great standup comics.  Thank you to Rocky Laporte, Brian Smith, Jeannie Doogan, Drew Frees and Mike Stanley.

Next, the beautiful Amy Tomasulo read the raffle winners, which was exciting for all of the winners of those amazing packages!  

Followed by two special videos of TN patients, which gave us deep insight and understanding into the daily toll that TN takes on a person’s quality of life.  It’s amazing to see the impact on the audience that those videos made.  It was emotional, inspiring and heartbreaking.  These two brave TN warriors brought tears to many people. 

Then the big give which raised twenty five thousand nine hundred dollars in a matter of minutes!  I continue to be astounded by how generous people are.  

LAUGH YOUR FACE OFF an event where I was surrounded by friends, family, doctors, scientists, TN patients and many supporters.  Everyone was there for a reason, to find a cure for Trigeminal Neuralgia.  Every person I met that evening truly cares about the patients and supporting the research for a cure.  LAUGH YOUR FACE OFF is a huge success because of all the people who show up to show that they care.  Thank you for a beautiful night that gives each and every TN patient hope for a better tomorrow.

Carter & Cheryl Orlet

How Cheryl Orlet and Her Family Cope

With Trigeminal Neuralgia

By Kathleen Sweeney

Cheryl Orlet is an amazing mother of three, two boys and one girl, of which one of the boys and the girl are twins. Although she is a TN Warrior, as we call them, she still manages to attend almost all of their soccer and baseball games and competitions. Her daughter is a dancer and when she is competing Cheryl tries to fix her hair and her makeup but her hands shake too much to do it. Other mothers help out by telling her to sit down and let them get her ready. It is this kind of support that carries her through. “The noise at those competitions is just so loud! I sit there just trying to smile for her. I put on a brave face. I don’t want her to see how much pain I am in. I have amazing friends who help me out so much.” But she worries that her suffering is affecting their childhood. Her deepest concern is that she is somehow robbing them of the carefree years all children deserve. They worry that their mom isn’t feeling well and that they might be making too much noise or are disturbing her in some way, causing her pain to worsen.

It all started seven years ago in 2011. “I was having an ungodly amount of pain that I think I stayed awake with for four days straight … just crying.” She could not get relief. She went to the emergency room and they sent her to an ENT doctor who sent her to see her dentist. Everything came up clean there so they sent her to her primary physician. As she told him “… there is this invisible line drawn down the middle of my face. The right side is just – I’ve never ever felt pain like that before. Even after having gone through two C-sections and having root canals done, I’ve never been in so much pain.” He told her it sounded like Trigeminal Neuralgia and referred her to a neurologist who gave her so much medication that she couldn’t function … and he just kept upping it. So she quit him. She finally found one she really liked and he gave her trileptal, which has minimal side effects. She wasn’t as groggy and tired. It allowed her to function. As she says, “The most important part for me is, I can suffer …  and put up with a lot, but I hate anything that takes away from my kids.” She doesn’t want to miss out on anything that happens in their lives.

Cheryl is a registered nurse. “The absolute worst thing about this disease is that not a lot of people are educated on it. … When I was in nursing school we literally learned about it for five minutes. It was a paragraph in our book when we did the section on neurology.”

Whenever Cheryl has to go to the emergency room and tell them she has trigeminal neuralgia they tell her they can’t find it in their system so they put her under headache or migraine. “It’s not a migraine. It’s the most ungodly amount of pain you could ever imagine. Some of them look at you like you’re a drug seeker, just there to get a fix. I am there as a last resort!”  On one particular day there was nurse who saw her and said she had never heard of trigeminal neuralgia but had just had someone else come in with it. She said they were asking for dilaudid, an opioid, and she wondered if that was a reasonable request. Cheryl responded “This pain is real. It is real!” The nurse was just amazed that she had two patients there with TN and she had never heard of it before. It is in these situations that she tries to raise awareness. “It needs to be made more aware. I love raising awareness for it. I just hope some money starts going to it.”

After three years of living in pain she decided to try surgery. She told her husband “This is how bad this disease is. I am so desperate I am willing to go into brain surgery.” But she was excited because she thought this could be “it”! On September 15, 2014 she had micro vascular decompression surgery. They found that an artery had adhered itself to the nerve. The surgeon was able to scrape the artery off of the nerve and then he put a Teflon pad around the nerve so that another artery wouldn’t or couldn’t do the same thing. She was supposed to be there for three days but was actually in the hospital for 10 days overall (3 days in ICU) with complications.

Her children came to see her after her surgery and she was asleep when they arrived. She awoke hearing her daughter crying. She was staring at the staples in her mother’s bald head behind her right ear. She said “Mommy are you OK? Are you going to be alright?” Although they had talked about it beforehand you just can’t really prepare children for such a thing. Her oldest son didn’t know what to think about it so he wrote his story (his version of her story) for a school project, which helped him to cope. He won First Prize and his story will follow this one, for you to read. He was in fifth grade at the time.

When Cheryl got home from the hospital she had about three weeks of relief. “A little bit of relief” is how she describes it. She was highly medicated and recovery was “just awful. Every time I sat up I would throw up.” Her symptoms returned and at times she thinks her trigeminal neuralgia was worse since she had the surgery. When I asked if there were any benefits at all she responded “No.” She has Type II, which means the pain is constant. And at times it is even worse. Washing her hair, her face, combing her hair, drinking, sweating, all increase the pain. And then there’s all the medicine. She can’t eat yet it makes her gain weight. She hops on the treadmill to work out which starts her sweating and then the sweat rolls down her face.

She started taking trileptal in 2012 and it was new to her. She has had success with it but she also needs baclofen due to her inner ear pain. “The pain is just so deep. Right between my inner ear and the roof of my mouth.”

But again, what makes the pain that much worse is the way it affects her kids. They pick up on how bad she is hurting and it hurts her to know this. When it gets really bad her right eyelid swells shut. Her children will ask “Mom do you need me to get you a heat pack?” or “Can I get you something?” “Do you need anything?” The worst is when they are kids being kids. Her twins will be jumping around and all of the sudden they just stop and freeze. They turn and say “Oh mommy. Is this making your head hurt?” Or when her daughter who has asthma gets coughing hard and makes herself stop to apologize. “Mommy, I’m so sorry. Is this coughing hurting your head?” Cheryl tells her “You are a little girl with asthma. Don’t worry about me. I’m the mom. I need to be worrying about you. Don’t worry about anything you do. I’m worried about you.”

One day she passed out at work, the pain was so horrible. She collapsed and they sent her to the hospital. Her neurologist thought a University doctor might see something he didn’t or have some idea of something else that might work … just to get his opinion and see if there was anything they hadn’t tried. He was good (they said the best!) but when he saw her chart he told her she was on what she needed to be. That her best bet was pain management and since there is no cure so, basically, this is your life. Just go day by day with the pain management drugs. When she went back to her neurologist because she was having more symptoms she was told she was no longer a patient since she went to another doctor (whom he recommended). That was quite a surprise to her as she found herself without a neurologist to work with. He general doctor has since taken over and doses her trileptal. He works with her; he believes her pain and he has become a good friend. But she still can’t believe the other one just let her go after all they had been through together.

For Trigeminal Neuralgia Awareness Day on October 7, 2015, the Belleville News Democrat newspaper did a story on Cheryl. It is in a bigger town next to hers. She just really wants to raise awareness! She sells shirts with Trigeminal Neuralgia on them and donates the proceeds to the Facial Pain Research Foundation. She also wears them so people will ask her what it is so she can tell them about it and that she sells them to raise funds for research. She has had people stop and say to her “I have that too.” She loves to raise awareness of it.

Her husband has been a colossal help. She hasn’t done the laundry in at least six years because it is too painful to bend over. When he would have a headache or a toothache he would ask her “Babe, how do you do this every day?” Now he just asks it out of the blue. She says “You do what you have to. It affects every single day of your life. There’s just not a day without pain. It’s ‘How bad is it going to be today?’ ‘Is it a day I can even get out of bed?’ Or is it I’m going to be in the middle of doing stuff and I just have to get through that. Luckily I have an awesome support system. … I think if it wasn’t for my family there would be a lot more days in bed.”

Although Cheryl has tried acupuncture and a number of other things, people always seem to have some advice to give of some thing new she should try. She says she is scared to try anything because she doesn’t want it to get worse. She can’t imagine being in any more pain than she is in now and she is not willing to take that chance.

She worries that she is stealing her children’s childhood; that her pain is affecting them in some negative way. “You just try to be as happy as you can and not let your kids see the tears. They worry about me so much and I don’t want them to. I want them to just be happy kids and not tell their friends when they come over to not be too loud cause ‘I don’t want to hurt my mom’s head.’ I don’t want that. I don’t want them to look back on their childhood and say ‘my gosh, mom was sick all the time.’ She never used to miss anything but this past year has gotten so bad that she had to miss things. Her children say “I get it. I get it Mom.”

“Luckily I have a job where they are understanding. I’m an administrative nurse. I do scheduling and a lot of paperwork and just make sure that all goes well. I’ve been at my job for 20 years. I started in the kitchen and I worked my way up to Nursing Director. If it wasn’t for them I wouldn’t have a job. They know when I’m not feeling good. They’ll say ‘Go home! Go work from home.’ There are some days I can’t even sit upright in a chair.” When she thinks “I can’t do this anymore” she recalls how “I busted my ass to get through nursing school. It was HARD. I haven’t been doing all this work for Trigeminal Neuralgia to rob me of my medicine career. Something I’ve been wanting to do forever.”

When asked what she would say to someone who just had that jolt of pain for the first time she said first to find a medicine regimen that works for you. Don’t be afraid to stand up to your doctor. If you can’t find agreement with him or her find a new one. Definitely join a few support groups on Facebook. Get involved and raise awareness.

“By all means possible take the negative and turn it into a positive.”

Carter’s First Prize Story in Fifth Grade

            Webster's Dictionary defines "incurable" as "not likely to be changed" but my life and my family's life (especially my mom's life) has changed in so many ways in the last 5 years. My mom has a rare and incurable disease called trigeminal neuralgia and this is her fight and our family's journey.

This all started one morning when she woke up. When she woke up she had horrible facial pain. She tried taking medicine like ibuprofen and Tylenol but nothing helped. After a couple days she still had pain so my dad took her to the ER and the doctors just didn't know what to do. They decided it would be best for my dad to take her to the ear, nose, and throat doctor. I was very confused why they weren't just taking her to another hospital. During this time I was just ... confused. I barely knew what was going on and why she was having this pain. When she came home from the doctor they said that she needs to see her dentist.

That evening she got into the dentist. After examining her he determined that there was no problem with the gums or teeth that would cause her any pain. The dentist said that she just needed to go see her doctor. She has seen him for many years and she trusts him.

The next day my mom was able to get in to see him, my mom explained to him that she was in such bad pain she couldn't bear it. She described her pain to him and she said "if you drew a line down the center of my face, it's the entire right side of my face that is in horrible pain, especially the inner ear and the roof of my mouth". She then went on to tell him about how she couldn't sleep and walked around our house at night because she couldn't sleep because she was hurting so bad. He looked at her and said, "I'm afraid you have trigeminal neuralgia". They talked about different medicines she could take to reduce her symptoms, there is no cure for the disease but there are medications that can reduce some of the pain and other symptoms such as relaxing the nerve. He prescribed medicine for her that people with seizure disorders take. He told her that she should try to find a neurologist. Prior to her first visit with her new neurologist my mom was admitted to the hospital for some pain management. During her hospitalization, she was given steroids and pain medicine and she finally felt some relief.  She remained in the hospital for a few days and she was released with orders to see a neurologist.

Within the week my mom went to see what would be the first of 6 neurologists. All the different medicines he was trying with her made her very tired and it was hard for her to do anything and she slept most the time. Every time she told him that she was in pain he increased her medications. After going back and forth with that doctor many times and disagreeing about treatment my mom went to look for another doctor. The next doctor she saw suggested she have a treatment done called "gamma knife" this is a very precise radiation treatment that is focused on one small area. The doctor wanted to do this treatment to directly access the trigeminal nerve to attempt to numb the pain or at least decrease it. After a lot of testing they said she wasn't a candidate for the gamma knife treatment. It seemed like she would get so excited only to be disappointed, sometimes it was hard to see her so upset. This doctor referred my mom to another doctor across the river.

I remember my mom came home very upset from this appointment, the doctor was very short with her and would not listen to all of her symptoms. This doctor wouldn't give her time to tell her story and he pretty well just blew her off and wouldn't allow my mom the chance to speak. He did at least order an MRI to look for any abnormalities which came back

OK and that was frustrating also, she didn't want anything bad to show up but she did want some answers. So that was another doctor gone which left her with no doctor.

There were few other neurologists that she saw that were also one­appointment doctors. Even though all this was so frustrating she was always happy. Between Mid 2013 to August 2014 my mom was in the hospital about every other month. These times were the hardest and I would miss my mom so much. We would go to the hospital to visit and dad would say "I know this is hard guys but please don't cry in front of your mom it may upset your mom more" and when we got to the hospital we could tell mom was being strong even though I could tell she was in pain and was missing us. Mom would smile, hug us, and ask about our days and school and our activities. It was hard not to get sad or scared when I saw the IV's and monitors hooked up to her.

One good thing did come from all these times in the hospital, she found a really good neurologist and she really liked him. He helped her find new medications with few side effects which was good for us because she wasn't as tired and could do more stuff with us. After many more times in the hospital, he introduced my mom to a neurosurgeon he worked with. He was also very nice and wanted to help, the first time he met her he said, "don't cry I'm going to help you". My mom came home excited that she had found a doctor that would help. In august 2014, after being in the hospital again, she decided to go in and have brain surgery.

According to my mom what the doctor was going to do was to go into her skull and the brain and look at the nerves that come out of the spinal cord and look at the trigeminal nerve and see what was going on. The doctor would look and see if there was anything touching the nerve and if there was he would move it away so the nerve wouldn't be affected and that would hopefully stop all the pain.

The surgery was very scary for mom but just as scary for me and dad. Bradyn and Caitlyn were too young to understand. Just hearing brain surgery is scary, mom and dad tried to act like it wasn't a big deal. My mom was supposed to only be gone for three days. My brother, sister and I stayed at my grandma and grandpas house. They tried to keep things as normal as possible like there was nothing going on but we missed mom, dad, our pets and our home. Mom and dad ended up being gone for 10 days, we got to see her one time while she was at the hospital. We walked into her room and it was really scary for us, she was hooked up to all kinds of wires and tubes, they had shaved part of her hair off and there was a row of staples in her head. We were very nervous to go by the bed but so happy to see her. She was happy to see us but she was in a lot of pain. My mom's nurse and pain management doctor had heard so many stories about us that they had presents ready for us, they gave us a bag with candy and a book that had an invisible ink pen, her doctor made us balloons with smiley faces made out of the gloves that the doctors and nurses wear. I felt better about my mom being there after seeing how nice the people were that were caring for her.

When my mom came home she was having a very hard time, her pain was still very bad, she kept telling us that it was going to be okay because she was getting better. Mom spent about two weeks in bed before she could start moving around the house. It was so great having her home because even though she was in bed we could see her every day. So many people were helping us out, I couldn't believe all of the people coming by to bring us dinner and they always brought dessert too! Mom and I would watch movies in her room even when she was not feeling well, just had to make sure not to move the bed too much because it would hurt her head too much. It was a hard time but we were doing good because we were all together, we were just ready for her to feel better and get back to how she was four years ago.

I am sad to say that never happened, mom even says sometimes she thinks the surgery actually made it worse. My mom saw another neurosurgeon to see if anything else could be done and he told her there was no cure for this disease and she has a rare type of trigeminal neuralgia and all she can do is have help dealing with the pain.

My mom took this bad news and turned it into a good thing by teaching others about her disease. Last October the Belleville News Democrat put a story in their paper about my mom, they came to the house and talked to her and put it in the paper. Mom has also been raising money to give to the people that research cures. My mom makes me proud, it is hard seeing her in pain but no matter what is going on she is always there for me and my brother and sister.

Mervyn Rothstein

Interviews

Douglas K. Anderson, Ph.D.

In 2018 Douglas K. Anderson was the recipient of the US Congressional Certificate of Recognition and The University of Florida McKnight Brain Institute established the Douglas K. Anderson Facial Pain Research Program to fund future research to find cures for TN and neuropathic pain.

Douglas K. Anderson, Ph.D., is eminent scholar professor and chair emeritus of the Department of Neuroscience at the University of Florida, College of Medicine, former director of the McKnight Brain Institute at the University of Florida. He is director of research and a trustee of the Facial Pain Research Foundation. He was interviewed by Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005

Why did you want to be a scientist, and how did you become one?

I had a cousin who was a physician, and he kept after me to go into medicine, saying we would go into practice together. So between my junior and senior year at the University of Texas I got a summer internship at MD Anderson Hospital in Houston, which is a world-class cancer hospital. I was there for about three months, and about a month into it I realized that if I had to make a living as a doctor I would starve to death, because it was difficult for me to work with sick people. I was dealing with pediatric cancer cases and I would go home and cry. But I had spent about half my time working in the research laboratory, and I loved the lab. So I went back to school and changed my major from zoology pre-med to straight zoology. I didn’t tell my parents until Christmas – which was an interesting Christmas. And I went back to Anderson Hospital after I graduated and worked with a Ph.D. instead of an M.D. I got my masters at the University of Houston, and my Ph.D. at Michigan State in 1972.

You worked for 33 years for the Veterans Administration. What kind of work did you do?

I was there from 1973 until I retired in 2006. The V.A. was very good about allowing us to have appointments at medical schools, so I had a dual appointment. I was working on spinal cord injury both with my academic appointments and at the V.A. I was for a year the Department of Veterans Affairs Deputy Director of Medical Research.  

Why after more than 30 years of researching spinal cord injury did you decide to turn your efforts to finding a cure for trigeminal neuralgia?

The main reason was that spinal cord injury was so complex, because the spinal cord is so complex. We were working on locomotor function – movement – which is an incredibly difficult thing to do. Spinal cord injury is a constellation of symptoms – bladder function, sexual function, pain, temperature regulation, so many things. So I decided that instead of trying to hit a home run, I would go after a bunt single. One of the major complaints most spinal cord patients have is pain, and all scientists generally in a situation like that look for the simplest model. I’m not saying that trigeminal neuralgia is a simple model, but relative to spinal cord injury it is. One nerve, a big nerve, and the pain is in that nerve. I became interested in mechanisms and the patho-physiology of pain.

How is the Facial Pain Research Foundation unique from other research organizations?

We try to keep the bureaucracy at a minimum. We try to keep, while diversified, the number of projects we fund to maybe four, five, six at the most. We have a purely volunteer organization. Nobody gets paid anything. Our scientists don’t get paid. Our Trustees don’t get paid. Our support staff doesn’t get paid. I don’t get paid. Ninety-five percent of the money that comes in goes directly to the researchers for the research. I try to look for the best people in their field in the world to work for us. And to work with us.

How were you able to attract top researchers in the world to such a small foundation?

Instead of having them submit a grant, we say, this is what you’ve been doing, give me something we can hang a hat on, then go and do what you think will be exciting. So instead of their having to deal with a bureaucracy and submitting a grant every six months or a year, we, on a small scale, give them the money quickly, give them their leeway and see what they can do.  I call this “money with soul.” This is money given by people directly. This is not some faceless National Institutes of Health grant given with your taxpayer dollars. 

You were chairman of a prestigious neuroscience department and director of the McKnight Brain Institute.  Why is the Facial Pain Foundation’s research so important to you? Is it in part because a solution to neuropathic facial pain would also help provide scientific answers for multiple sclerosis, epilepsy, back pain, and other neuropathic pain?

Yes. I think it has a chance of making a difference. Mother Nature in my opinion is very conservative. The neurotransmitters in the gut are very similar to those in the brain, except you have different receptors and they work in a slightly different way. I look at this, and I think other people do too, as hopefully being sort of a Rosetta stone for pain, for neuropathic pain. Fundamental mechanisms are involved, and I think we can have a broader effect than just trigeminal neuralgia, also maybe diabetic pain and other pains. I think this research has a chance to be bigger than what you might expect it be.

How difficult is it to describe the science and the research to nonscientists?

For me, it is not too difficult. I’ve dealt closely in spinal cord injury and now in trigeminal neuralgia with the patient population we’re serving. I’ve always felt it was important to go to them and try to explain what we’re doing. I just hope that when I simplify it for lay people I’m not overdoing it so that I’m giving them incomplete or false information. 

At the beginning of 2011, the foundation set a goal of finding cures within ten years of establishing its research program.  At a minimum, what do you hope to accomplish before the end of 2020?

I’m hoping we will have a handful of genes or one gene we can hand off to others to test, and do animal studies and see if we can chart models of neuropathic pain by using the gene or the constellation of genes working together. To see if we have pain because they’re not working together, or we have pain because they’re overworking. Also, at the very minimum we hope we will have done human tracking with MRIs to chart the pain pathways that are involved, and locate the pain signal from the nerve to the brain, to where the brain can process it. And once you have that, then you have targets to do your intervention, do your injections. When you see which pathways are involved, you can define the neurotransmitters, so you can attack it that way. We are also hoping that the gene people will have solid data on how complex the gene interactions are – which is the alpha dog gene, or if there is an alpha dog gene, and how the genes interact.  

You wrote the following Facial Pain Research Foundation mission statement:

    “The Facial Pain Research Foundation is to establish a well funded translational research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to developing groundbreaking therapeutic strategies that will permanently stop the pain of TN and related neuropathic pain syndromes.”

In your opinion, how are the foundation, its scientists, trustees and volunteers doing in relationship to its purposes and goals?

I think we’re doing fantastic, and I’m not someone prone to hyperbole. I’m very careful. I never would have dreamed in 2011 when we had zero dollars that we would now have collected a little more than $4 million. That $4 million has had a multiplier effect and raised even more funds for the research. I find that to be phenomenal. I think we are doing and our scientists are doing a wonderful job and making strong progress. I’m gratified and surprised that we have done as much as we have done in the period we have been in existence.